key informant interview in qualitative research

Key Informant Interviews: An In-Depth Guide for Researchers

Frankline kibuacha | feb. 02, 2024 | 8 min. read.

What are Key Informant Interviews?

Key Informant Interviews (KIIs) are specialized qualitative interviews conducted with individuals (key informants) recognized for their insider knowledge or unique perspectives on a specific topic. This method is distinct in its focus on depth rather than breadth, targeting information-rich sources.

Unlike surveys that seek quantitative data or focus groups that explore group dynamics, KIIs delve deeply into individual perspectives, offering a granular understanding of complex issues.

KIIs are invaluable for gaining insights into trends, motivations, perceptions, and experiences. They are particularly effective in sectors where in-depth, expert knowledge is crucial, such as public health, policy development, and market analysis.

The Importance of Key Informant Interviews in Research

Key Informant Interviews (KIIs) play a pivotal role in qualitative research, offering a depth of understanding often unattainable through other methods. Their significance in various research settings can be elaborated as follows:

• Access to Specialized Knowledge and Expert Insights: KIIs enable researchers to tap into the wealth of knowledge possessed by experts in specific fields. This is especially crucial in areas where specialized insights are vital to understanding complex issues. For instance, interviews with healthcare professionals in public health research can uncover nuances in patient care practices that surveys may not reveal.
• Understanding Context and Nuance: One of the primary strengths of KIIs is their ability to capture the context and nuances around a subject matter. Unlike quantitative methods that offer breadth, KIIs provide depth, uncovering the ‘why’ and ‘how’ behind observable trends. This depth is invaluable in fields like policy analysis, where understanding the rationale behind decisions can inform more effective policy development.
• Flexibility and Adaptability: KIIs offer unmatched flexibility, allowing researchers to explore new lines of inquiry as they emerge during the interview. This adaptability is critical in exploratory research or when dealing with emerging issues, where predefined survey questions might miss important aspects.
• Identifying Hidden or Sensitive Issues: Given their expertise and experience, key informants can provide insights into sensitive or hidden issues that might not be readily disclosed through other methodologies. In contexts such as humanitarian work or conflict research, KIIs can reveal underlying problems or needs that are not visible on the surface.
• Enhancing Other Research Findings: KIIs can complement and improve findings from quantitative research. They add depth to the statistical data by providing qualitative insights, offering a more comprehensive view of the research topic.
• Case Studies Illustrating Impact: Real-world examples further illustrate the impact of KIIs. For example, in environmental research, KIIs with local community leaders and environmental experts have been instrumental in understanding the impact of climate change at a local level, leading to more targeted and effective conservation strategies.

Key Informant Interviews are an indispensable tool in the researcher’s toolkit. They provide a level of detail and understanding crucial for fully grasping complex issues, influencing policy, and informing comprehensive and effective solutions.

Methodology and Best Practices for Key Informant Interviews

Effective Key Informant Interviews require a well-thought-out methodology and adherence to best practices. This section outlines the key steps and considerations for maximizing the value of KIIs.

• Criteria for Selection: The selection of key informants is a critical step. Ideal candidates are those who have in-depth knowledge or experience relevant to the research topic. This could include industry experts, community leaders, or individuals with unique experiences pertinent to the study.
• Diversity and Representation: It’s essential to ensure diversity in selecting informants. This includes diversity in profession, demographic characteristics, and perspectives to obtain a well-rounded understanding of the issue.
• Recruitment Strategies: Effective recruitment may involve formal invitations, leveraging professional networks, or recommendations from other experts in the field. It’s crucial to clearly communicate the purpose of the research and the informant’s role.
• Balancing Structure and Flexibility: While having a structured set of questions to guide the interview is important, flexibility is key. Researchers should be prepared to explore interesting avenues that emerge during the conversation.
• Question Types : A mix of open-ended questions (to explore opinions and experiences) and more specific questions (to gather detailed information) is recommended. Avoid leading questions to minimize bias.
• Piloting Questions: Before conducting the interviews, it’s advisable to pilot the questions with a small group to ensure they are clear and elicit the desired information.
• Building Rapport: The initial part of the interview should focus on building rapport with the informant. This can be achieved through a friendly demeanor, active listening, and genuine interest in the informant’s perspectives.
• Interview Techniques: Effective techniques include probing for details, paraphrasing to check understanding, and managing the pace of the interview. Non-verbal cues play a significant role in creating a comfortable environment.
• Recording and Note-Taking: It’s essential to accurately record the interviews, subject to the informant’s consent. This can be done through audio recordings or detailed note-taking. Clear, concise, and accurate notes are vital for accurate data analysis.
• Informed Consent: Informants should be fully informed about the purpose of the research, how their information will be used, and their rights, including the right to withdraw from the interview at any point.
• Confidentiality and Anonymity: Researchers must respect the confidentiality of the information provided and ensure anonymity if the informant requests it.
• Cultural Sensitivity: It is crucial to be culturally sensitive and respectful of the informant’s background and beliefs, especially when dealing with sensitive topics.
• Debriefing and Reflection: After each interview, a debriefing session can be helpful for the research team to discuss initial impressions and insights.
• Data Management: Organizing and securely storing interview data is crucial for analysis and future reference.

Challenges and Solutions in Key Informant Interviews

Key Informant Interviews, while invaluable in qualitative research, present unique challenges. Addressing these effectively is crucial for the integrity and utility of the data collected.

• Solution: Employing multiple interviewers and informants can provide diverse viewpoints, reducing individual bias. Establishing a clear, structured interview framework helps maintain objectivity. Regular team discussions can also aid in identifying and mitigating biases.
• Solution: Developing a detailed interview guide ensures consistency across interviews. Validity can be enhanced through careful selection of informants based on their expertise and through cross-verification of data with other sources.
• Solution: Flexibility in scheduling and using technology for remote interviews can alleviate logistical issues. Building rapport with informants beforehand can also ease scheduling difficulties. It is also important to have backup interviewees, for instance, someone in the same department with the same knowledge as the primary informant.
• Solution: Employing culturally aware and, where necessary, multilingual interviewers can mitigate these issues. Researching cultural norms and using interpreters when needed is also helpful.
• Solution : KIIs typically involve a small group of respondents, so your best bet is to attain a sample that is well knowledgeable of the topic at hand.
• Solution: Utilizing qualitative data analysis software can streamline coding and thematic analysis, reducing time and subjective biases. Engaging multiple team members in the analysis can provide a balance of perspectives.

While Key Informant Interviews pose specific challenges, these can be effectively addressed through careful planning, methodological rigor, and cultural sensitivity. Overcoming these challenges ensures the integrity and value of the insights gained from this qualitative research method.

Analyzing and Utilizing Data from Key Informant Interviews

Analyzing and utilizing data gathered from KIIs are as crucial as the interview process itself. This phase transforms raw, qualitative data into meaningful insights that can guide decision-making and policy formulation. It is worth noting that, due to their typically small sample sizes and qualitative nature, KIIs are almost never quantified.

• Transcribing Interviews: The first step is to transcribe the interviews verbatim. This process involves converting audio recordings into written text, capturing every word, and noting critical non-verbal cues.
• Data Cleaning: Transcripts should be reviewed and cleaned for clarity and accuracy. This includes removing irrelevant sections, correcting errors, and anonymizing data if required.
• Thematic Analysis: One of the most common approaches is thematic analysis, which involves identifying patterns and themes within the interview data. This process starts with reading through the transcripts multiple times to gain a deep understanding of the content.
• Coding: Coding involves labeling text segments with tags that summarize their content. This could be done manually or with the help of qualitative data analysis software. Initial codes are generated and then refined and grouped into broader themes.
• Interpreting Themes: Once themes are identified, the next step is to interpret them in the context of the research objectives. This involves understanding how these themes contribute to answering the research questions and what new insights they offer.
• Cross-Verification with Other Data Sources: To enhance the validity of the findings, it’s essential to cross-verify the insights from KIIs with other data sources, such as surveys, literature reviews, or observational studies.
• Triangulation: This process involves using multiple data sources or methods to corroborate the findings. Triangulation strengthens the credibility of the research conclusions.
• Developing Recommendations: The insights derived from KIIs should be translated into actionable recommendations. This involves considering how the findings can inform policy, influence strategies, or guide practical interventions.
• Reporting Findings: When reporting findings, it’s essential to present the data in a way that is accessible and understandable to the intended audience. This could include using quotes from informants to illustrate points, creating visual representations of themes, or developing case studies.
• Subjectivity: One of the challenges in analyzing qualitative data is the inherent subjectivity. It’s crucial to approach data interpretation with an awareness of potential biases and strive for objectivity.
• Complexity of Data: Qualitative data from KIIs can be complex and multifaceted. Researchers need to be methodical in their approach to ensure that the richness of the data is fully explored and understood.

In a nutshell, analyzing and utilizing data from Key Informant Interviews require meticulous attention to detail, rigorous methodological approaches, and a careful balance between subjective interpretation and objective analysis.

When to Use Key Informant Interviews in Research

Understanding when to utilize Key Informant Interviews (KIIs) is crucial for researchers to gather in-depth qualitative data effectively. KIIs are particularly advantageous in specific research contexts:

• Exploring Complex or Sensitive Issues: KIIs are ideal when researching topics that are complex, nuanced, or sensitive. They provide a safe environment for informants to share detailed insights and personal experiences that might not be captured through other methods.
• Gaining Expert Perspectives: When a study requires expert opinions or specialized knowledge, KIIs are an excellent choice. They allow researchers to tap into the wealth of experience and expertise of individuals who are well-versed in the subject matter.
• Developing or Refining Hypotheses: In the early stages of research, especially when hypotheses are being developed or refined, KIIs can offer valuable insights that inform the direction and focus of the study.
• Understanding Contextual and Cultural Dynamics: When research involves understanding the cultural or contextual nuances of a topic, KIIs with local experts or community leaders can provide depth and context that other methods may miss.
• Policy Development and Evaluation: For policy-oriented research, KIIs with policymakers, stakeholders, and those affected by the policy can provide insights into both the impact of existing policies and considerations for future policy development.
• Market Research and Consumer Insights: In market research , KIIs with industry experts, consumers, or other stakeholders can uncover trends, motivations, and attitudes that inform marketing strategies and product development.
• When Quantitative Data Needs Qualitative Support: KIIs are also valuable when quantitative data requires qualitative insights for a more comprehensive understanding. They can explain the ‘why’ behind the numbers, adding depth to quantitative findings.
• Resource-Limited Settings: In settings where resources for large-scale surveys are limited, KIIs can provide significant insights without the need for extensive logistics and infrastructure.

The decision to use KIIs should be guided by the research objectives, the nature of the research question, and the context in which the study is conducted. When used appropriately, KIIs can be a powerful tool in the researcher’s arsenal, providing nuanced insights that are vital for in-depth understanding and informed decision-making.

Master Key Informant Interviews with GeoPoll

Key Informant Interviews (KIIs) stand as an indispensable qualitative research tool, adept at uncovering deep insights and nuanced understandings in a wide array of research settings. From exploring complex and sensitive issues to refining hypotheses and informing policy decisions, KIIs offer a unique avenue for accessing expert knowledge and contextual information that other methods might miss.

This guide has journeyed through the intricacies of KIIs, highlighting their importance, methodology, challenges, solutions, and ideal usage scenarios. The careful planning, ethical considerations, and skilled execution required for effective KIIs underscore the need for experienced researchers and methodologists.

GeoPoll, with its vast experience and expertise in conducting KIIs across diverse sectors and regions, is uniquely positioned to help you leverage this powerful research method. Our seasoned professionals are adept at navigating the complexities of KIIs, ensuring that each interview is methodologically sound and rich in valuable insights. We offer a full spectrum of services, from designing the interview guide and selecting key informants to conducting the interviews and analyzing the data.

Contact us for further information on how Key Informant Interviews can enrich your specific research endeavors and how we can support you.

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Key informant interviews

Key informant interviews involve interviewing people who have particularly informed perspectives on an aspect of the program being evaluated.

Key informant interviews are "qualitative, in-depth interviews of 15 to 35 people selected for their first-hand knowledge about a topic of interest. The interviews are loosely structured, relying on a list of issues to be discussed. Key informant interviews resemble a conversation among acquaintances, allowing a free flow of ideas and information. Interviewers frame questions spontaneously, probe for information and take notes, which are elaborated on later" (USAID 1996).

USAID (1996) lists a number of situations in which key informant interviews are useful:

• When decision-making can be achieved through qualitative and descriptive information.
• When it is important to gain an understanding of the perspectives, behaviour and motivations of customers and partners of an activity or project in order to explain the shortcomings and successes of an activity.
• When generating recommendations is the key purpose.
• In order to interpret quantitative data by interviewing key informants about the how and why of the quantitative findings.
• In order to help frame the issues that are relevant before designing a quantitative study.

Advantages to this method include:

They are an affordable way to gain a big picture idea of a situation.

The information gathered comes from people who have relevant knowledge and insight.

They allow for new and unanticipated issues and ideas to emerge.

Limitations to this method include:

There is a potential for the interviewer to unwittingly influence the responses given by informants.

There is a potential bias if informants are not selected with care.

Systematic analysis of a large amount of qualitative data can be time-consuming.

The validity of the data can sometimes be difficult to prove.

Advice for using this method

When formulating study questions, limit the amount to five or fewer.

The interview should allow for free discussion by informants however, interviewers should be aware of what questions to ask and topics that should be covered. 

When preparing a guide for interview topics, items are usually limited to 12 items so as to allow for in-depth discussion. It is sometimes useful to prepare different guides for different groups of informants.

When selecting key informants, it is often a good idea to start with a smaller amount as initially unplanned informants are often added. The total number generally is no more than 35.

In selecting key informants, make sure to include a wide range of perspectives and points of view, including selecting from different groups of key stakeholders.

See Interviews for more general advice on interviewing.

This USAID document advises how to conduct and apply the rapid appraisal technique known as key informant interviews.

Pact, Inc. (2014),  Field Guide for Evaluation: How to Develop an Effective Terms of Reference.  Washington.

USAID Center for Development Information and Evaluation (1996) Conducting Key Informant Interviews   Performance Monitoring & Evaluation TIPS . Washington DC, USAID. Retrieved from  http://pdf.usaid.gov/pdf_docs/PNABS541.pdf  via  USAID

'Key informant interviews' is referenced in:

• Qualitative impact assessment protocol
• 52 weeks of BetterEvaluation: Week 4: Including unintended impacts

Framework/Guide

• Communication for Development (C4D) :  C4D Hub: Check the results support causal attribution (strategy 2)
• Communication for Development (C4D) :  C4D Hub: Investigate possible alternative explanations (strategy 3)
• Communication for Development (C4D) :  C4D: Collect and/or retrieve data (methods)
• Communication for Development (C4D) :  C4D: Identify potential unintended results
• Rainbow Framework :  Collect and/ or retrieve data
• Rainbow Framework :  Identify potential unintended results
• Footprint evaluation
• Sustained and Emerging Impacts Evaluation (SEIE)

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Key Informants’ Interviews

• First Online: 27 October 2022

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This chapter provides a short description of the key informant interview (KII), an important data collection method in qualitative research. Then, the chapter explains the suitability of this method in qualitative research. The chapter discusses the selection process of key informants with the roles of researcher and interviewer. The chapter gives important guidelines of the steps to conduct KII. The chapter also provides some guidelines about the data process, data presentation, and data analysis strategies of KII. The chapter ends with a description of the advantages and disadvantages of KII.

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Akhter, S. (2022). Key Informants’ Interviews. In: Islam, M.R., Khan, N.A., Baikady, R. (eds) Principles of Social Research Methodology. Springer, Singapore. https://doi.org/10.1007/978-981-19-5441-2_27

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How many key informants are enough? Analysing the validity of the community readiness assessment

• Saskia Muellmann 1 ,
• Tilman Brand 1 ,
• Dorothee Jürgens 1 ,
• Dirk Gansefort 1 , 2 &
• Hajo Zeeb   ORCID: orcid.org/0000-0001-7509-242X 1 , 3  

BMC Research Notes volume  14 , Article number:  85 ( 2021 ) Cite this article

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Communities are important settings for health promotion and prevention. The community readiness assessment offers a structured approach to assess resources and opportunities to tackle a health problem within a community. The assessment relies on semi-structured interviews with key informants from the communities. A number of 4–6 key informant interviews are recommended in the literature. However, it is unclear whether this is sufficient to obtain a valid representation of the respective community. This study analysed whether increasing the number of key informants from 4–6 to 12–15 alters the results of the community readiness assessment.

A total of 55 community readiness interviews were carried out in 4 communities. Overall, the community readiness scores showed little variation after having interviewed 10 key informants in a community. However, even after completing 10 interviews in a community, key informants were still able to identify up to 6 new information items regarding community efforts for physical activity promotion among the elderly, contact and communication channel for informing or approaching the target group, or barriers to participation.

Introduction

Community-based interventions are important approaches to prevention and health promotion because they can reach their target population in their natural living environment [ 1 ]. Such interventions can initiate changes not only on the individual level but also on different levels of the social and built environment and thus may lead to sustainable health improvements [ 2 ]. While the term community covers a broad range of social groups that share a common identity or other characteristics [ 3 ], in this article community refers to small scale geographical areas where people live under the same political administration such as neighbourhoods, city districts or towns. Community-based approaches often rely on early involvement of local stakeholders and residents to foster participation and capacity building [ 4 ]. The community readiness assessment (CRA) offers a structured approach to assess resources and opportunities to tackle a health problem within a community [ 5 ]. It builds upon a stages-of-change approach and associates each community with a certain degree of preparedness ranging from no awareness to professionalization of efforts. The assessment relies on semi-structured interviews with key informants from the communities. A number of 4–6 key informant interviews are recommended in the community readiness (CR) literature [ 5 , 6 ]. However, it is unclear whether this number suffices to obtain a valid representation of the community [ 7 ]. In qualitative research, the concept of data saturation refers to the point in data collection when no new information arises from subsequent data collection efforts [ 8 , 9 ]. Studies examining the number of qualitative interviews required to reach data saturation found that 12 [ 10 ] to 17 interviews [ 8 ] appeared to be sufficient. Nevertheless, the number of interviews necessary to achieve a valid CR assessment in the field of physical activity (PA) promotion has not been investigated yet. As part of a community-based research project on PA promotion for the elderly (AEQUIPA – Ready to Change) [ 11 ], this study analysed whether increasing the number of key informants from 4–6 to 12–15 alters the results of the CRA.

Study population

Key informants (e.g., representatives from local public authorities, senior citizen advocacy groups, sports clubs) were either identified via online searches or recommended by other key informants. They were interviewed with an adapted version of the CRA targeting PA in older adults [ 12 , 13 ]. The Ready to Change project entailed several rounds of CRA in the participating communities. In the first round in 2015, 4–6 key informants per community were interviewed. In the second round in 2018 (data base of this analysis), the key informants from the first round were interviewed again, but the sample was extended by 6–10 new key informants in each community.

Data collection

The CRA was conducted between April and May 2018 in four communities in the Metropolitan region Bremen-Oldenburg, Germany. The sample comprised two semi-rural (both about 30,000 inhabitants) and two urban communities (districts of a larger city; 27,000 and 36,000 inhabitants, respectively). The communities were selected based on the fact they witnessed a marked increase in population ageing. Levels of deprivation and sociocultural diversity were higher in the urban communities compared to the semi-rural ones. The adapted CRA interview guide contained closed and open-ended questions addressing the five dimensions of the CR [ 5 ]: 1. Community efforts and knowledge of efforts, 2. Leadership, 3. Community climate, 4. Community knowledge of the issue, and 5. Resources. Interviews were conducted face-to-face or via telephone. All interviews were audiotaped and transcribed verbatim.

Based on the instructions of the CR manual [ 5 ], each interview was scored independently by two researchers to provide a CR score for each dimension and an overall CR score using a nine-point rating scale (scores between 1 = no awareness and 9 = professionalization). To examine whether increasing the number of interviews from initially 4–6 to 12–15 leads to a change in the CR score, the mean CR score of the initial sample was compared with the mean CR score of the newly identified key informants for each community. Mean differences were calculated with 95% confidence intervals (CI). For analyzing whether mean CR scores stabilize with increasing numbers of interviews, change in the mean CR score was calculated for each new key informant interviewed. Prior to the analysis, we defined that the mean CR score is stable if the change with every new respondent is ≤ 0.1 standard deviations (SD), taking Cohen’s classification of effect sizes as an orientation [ 14 ]. Therefore, we calculated change in the CR score as standardized mean differences ( Standardized mean difference  =  (CR mean score (x respondents + 1) —CR mean score (x respondents) )/SD (CR mean score) ). The analysis of the stabilization of the mean CR scores was performed using the original order of conducted interviews and a random order of respondents. In addition to the analysis of the CR score, we wanted to find out the level of content-related saturation that was reached by increasing the number of interviews. To this end, we selected three open-ended questions from the CR interview guide and analysed whether an interview added new information regarding (a) community efforts for PA promotion among the elderly, (b) contact and communication channel for informing or approaching the target group, and (c) barriers to participation. A linear regression was performed to analyse the association between the number of interviews and newly identified issues of the CR.

A total of 55 respondents were interviewed. The number of interviews per community varied from 12 to 15. The majority of key informants were from sports clubs or sports facilities (40%) or worked for public authorities (36%). 15% were representatives from senior citizen advocacy groups and 9% worked for civil services in the communities. The mean age of the respondents was 59 years (standard deviation = 9.25, range: 29–85). 56% of the respondents were female and 44% were male. At some point during the recruitment process it appeared difficult to identify further key informants in some of the communities. This is the reason why it was not possible to obtain 15 interviews in all communities.

A comparison of the CR scores from the initial sample with the extended sample revealed mean differences of −0.45 to 0.67 CR scale points across the communities (Table 1 ). None of the mean differences was statistically significant.

Figure  1 shows how the CR score changed with increasing number of interviews. Overall, the figure indicates a convergence of the CR scores with only little variation after having interviewed 9 or 10 key informants.

Mean CR score in 4 communities. Number of respondents are shown on the X axis

Figure  2 displays the change in the CR score in the four communities when adding more interviews as standardized mean differences. After interviewing 10 key informants the change in the CR is smaller than ± 10% of the SD which translates into 0.08 CR scale points. Using a random order of respondents did not change the results suggesting that after interviewing 10 key informants little variation in the CR scores can be observed (Additional file 1 : Figure S1 and S2).

Standardized change in CR mean score over number of respondents (X axis)

Overall, a linear regression analysis confirmed a decline in newly identified issues with increasing number of interviews, although this association did not pass the threshold for statistical significance in the case of community efforts (Additional file 1 : Table S1). Thus, there is a trend that with every additional interview the amount of new information gained from it becomes smaller. However, as can be seen in the (Additional file 1 : Figure S3 to S5), even after completing 10 interviews in a community, respondents were still able to identify up to 6 new community efforts for PA promotion.

This study aimed to analyse whether increasing the number of key informants from 4–6 to 12–15 alters the results of the CRA. Overall, there were no large differences in the CR scores between the initial and the extended sample. Extending the sample did not change the mapping of the communities to a certain transtheoretical stage of change in the CR model. The CR scores showed little variation after having interviewed 10 key informants in a community, indicating that this may be a good number to strive for in CRA interviews. Our results are similar to a study by Guest et al. [ 10 ] who systematically examined the degree of data saturation in 60 in-depth interviews with women in two African countries. The authors started with analysing the first six interviews, then added a set of six more interviews, and so on. The process was repeated until all 60 interviews have been analysed. The authors found that data saturation occurred within the first 12 interviews with 92% of codes identified therein [ 10 ]. Two approaches on data saturation, code saturation (i.e., no additional issues raised, codebook stabilized) and meaning saturation (i.e., no further nuances or dimensions can be found), were examined in 25 in-depth interviews with HIV patients [ 9 ]. The authors found that code saturation was reached after nine interviews (91% of codes identified) and meaning saturation was achieved between 16 and 24 interviews. In addition, a study by Francis et al. [ 8 ] found that data saturation (i.e., minimum of 10 interviews, no new themes after analysing 3 further interviews) in theory-based interview studies was achieved after conducting 17 interviews. Focusing on studies applying the CR tool, Kostadinov et al. [ 6 ] included 40 articles published between 1999 and 2013 in a systematic review. The authors reported that the number of interviews per community varied between one and 33 (mean = 7.3, SD = 5.9, median = 6, six studies provided no information on the number of interviews per community), with 15% of studies using less than the recommended four interviews per community. This is in line with studies published since 2013 that followed the recommendations of the CR handbook and conducted an average of four to eight interviews per community (e.g., in [ 15 , 16 , 17 , 18 , 19 ]). However, Kesten et al. [ 20 ] used the concept of theoretical saturation (i.e., no new concepts are expected by conducting more interviews) to determine the necessary number of interviews for assessing CR for overweight and obesity prevention in pre-adolescent girls. Theoretical saturation was reached after conducting 33 interviews with key informants (e.g., parents, teachers). In addition, Pradeilles et al. [ 21 ] interviewed 12 key informants per community across two cities in Ghana, but did not give any reasons for selecting 12 interviewees per community. While it seems that conducting 10 interviews per community provides a fairly stable classification of a community in terms of their CR score, our results also indicate that there may still be unidentified issues regarding community efforts for PA promotion, contact and communication channel for informing or approaching the target group, or barriers to participation in PA promotion. A reason for this could be the nature of the PA efforts in the communities. There were many small scattered efforts and thus it appeared that the key informants did not mention all or were not aware of them. This indicates the context- and topic-relatedness of CRA, which needs to be kept in mind when planning similar studies.

Limitations

Assuming stability of a mean if the change is less than 0.1 SD with every new respondent is an arbitrary choice. One could argue that small differences can lead to large changes if the sample is large and the differences go into the same direction. However, the results in our four communities did not indicate such a monotone pattern concerning the direction of change. Furthermore, there is a natural limit to the sample size of key informants. The number of potential key informants depends on the topic, the existing structures in the community, and the size of the community. For instance, in one of our selected communities it was not possible to identify more than 12 key informants who could provide information on community-based PA promotion in older adults. Our sampling strategy has the limitation that if key respondents recommend other potential key respondents (snowballing) the observations may not be independent from each other because the respondents may have shared views and attitude concerning the topic. Therefore we did not solely rely on snowballing but performed also internet searches to identify respondents. Another limitation is that in some cases key informants answered from their own point of view and may have had difficulties to respond on behalf of their community.

Availability of data and materials

The data that support the findings of this study are available from the corresponding author on reasonable request.

Abbreviations

Confidence interval

• Community readiness

Community readiness assessment

Physical activity

Standard deviation

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SM and TB drafted the manuscript. TB analysed the data. TB and HZ conceived and designed the study. DJ and DG scored the interviews. All authors read and approved the final version of the manuscript.

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Additional file 1: figure s1..

Mean CR score in 4 communities with random order of respondents. Number of participants are shown on the X axis. Figure S2. Standardized change in CR mean score over number of respondents (X axis) with random order of respondents. Table S1. Association between number of interviews and newly identified issues of CR (linear ordinary least square regression). Figure S3. Newly identified community efforts for the promotion of physical activity for older adults by number of key informants (X axis). Figure S4. Newly identified contact and information channels for the promotion of physical activity for older adults by number of key informants (X axis). Figure S5. Newly identified barriers to participation in physical activity for older adults by number of key informants (X axis).

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Muellmann, S., Brand, T., Jürgens, D. et al. How many key informants are enough? Analysing the validity of the community readiness assessment. BMC Res Notes 14 , 85 (2021). https://doi.org/10.1186/s13104-021-05497-9

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How to analyze key informant interview data

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Welcome to Part 3 of the 3-part series: Everything You Need to Know about Key Informant Interviews. Be sure to check out   6 Tips for Planning Successful Key Informant Interviews and How to Conduct a Successful Key Informant Interview before you read this post.

By this point, you have planned and conducted your key informant interviews. Now it’s time to gather all your notes and audio recordings to discover the stories behind your results. This post will provide tips on compiling, analyzing, and sharing the results of your interviews. Once you’ve analyzed your data, you’ll have an idea of what your informants collectively think about the community problem your interviews addressed.

THINK BACK TO YOUR GOAL & PURPOSE

Before you jump into organizing data, think back to your purpose for conducting key informant interviews. You decided to use this tool to gather information about a community issue from informed community leaders. Your results should explain community members’ perceptions and beliefs on the issue you were exploring.

Keep your purpose in mind as you begin reviewing your data. This will help you quickly identify the most important and relevant information your key informants shared. This will be especially helpful when you’re reviewing those interviews that got off track!

ORGANIZE & TRANSCRIBE THE DATA

Gather your notes and audio recordings from the interviews. Ensure your notes are legible and organized so you can reference important points or a specific informant’s responses in the future. If your notes are handwritten, you may want to type them in a word processing document to make your data analysis easier. Alternately, make multiple copies of your notes so you can add comments, highlights, etc. when you begin analyzing the data. Additionally, it will be helpful to summarize lengthy notes from your interviews in a separate document. This will help you more easily identify interview themes.

If you need a written record of the audio recordings, you’ll need to transcribe your audio files. You can either pay a professional transcription service or transcribe the files yourself. If you’re transcribing your own files, write or type exactly what you hear so the stories are not changed.

IDENTIFY THEMES

Once your notes are organized and audio files are transcribed, read back through all the data. As you’re reviewing, some common themes, or categories, should emerge. Take note of these themes.

If others also conducted interviews, ask them to add the themes that surfaced during their interviews to your list. For example, if you studied the decline of physical activity among youth in your community, you may notice that lack of infrastructure, safety concerns, and increased crime rates were common themes related to the reasons youth aren’t physically active. Trust your data as it will show common themes among all the interviews.

ANALYZE & SUMMARIZE THE DATA

Analyzing and summarizing your data are necessary to determine if and how the interviews answered your question(s). This step will also help you communicate your findings within your organization and community.

The simplest way to analyze your data is to go through your notes and/or audio transcriptions and categorize each informant’s responses by theme. This process will allow you to determine how often informants referenced a specific theme. You’ll also be able to use your categorized responses to find powerful quotes to use in your interview summaries.

Here’s an example of what a categorized list of responses might look like:

• Respondent 1: “I’ve been living here for 25 years. I used to see kids in the streets, playing, riding their bikes. Since those two shootings happened, I don’t see kids anymore. I guess now their parents make them stay inside, worried they’ll get shot too.”
• Respondent 2: “You know, my nephew, he’s only 11 years old, he was robbed a few weeks ago. He only had a cheap wallet and $10 on him but they still robbed him. He’s only a kid. My sister won’t even let him leave the driveway now.”

Once you’ve categorized all your responses, you can begin to summarize the results. Your summary might include:

• The most common themes that emerged throughout your interviews.
• The most common themes that emerged for each interview question.
• Any differences in responses based on demographics (e.g., age, gender, time living in community, position in community).
• Specific quotes or responses that support the problem(s) being addressed.
• An overall summary that captures your community members’ thoughts, beliefs, and recommendations.

IDENTIFY LIMITATIONS

It’s important to identify limitations that may have impacted your results or conclusions. Some limitations to consider when conducting key informant interviews include:

• It may be difficult to tell how reliable a person’s responses are. People may not quite understand your questions, may have unique opinions about a topic, or may simply tell you what they think you want to hear.
• The informants’ responses may vary greatly due to confusing questions, poor interview skills, or lack of participant knowledge about the topic. You can avoid these issues by thoroughly planning your interviews .
• Analyzing qualitative data can be hard! If you don’t have staff or volunteers who can analyze your data, hire an external evaluator to consolidate, analyze, and summarize your data.
• Bias may occur if the interviewers or data analysts know or work closely with your key informants. Avoid bias by working with a diverse set of trained, objective interviewers and analysts.

SHARE THE DATA

Sharing your results is the most exciting part! Instead of writing a lengthy report, use visual data representations such as diagrams or infographics to present and summarize key findings. These techniques will allow your partners and community members to easily see connections among themes. Using data visualizations will also make it more likely that your community members will share the results of your interviews.

You might also want to share your results through:

• A one-pager to share with partners, community members, or elected officials.
• Social media posts that highlight major findings.
• Formal community meetings to provide more details on your findings.

Sharing your results is a great way to share resources. It will benefit your organization, engage partners, and encourage collaboration within the community. Sharing your results is also an important step as you build upon the work of others. Most importantly, widely disseminated information can lead to more informed community decision-making regarding funding, programs, and policy changes.

We’ve covered a lot in our 3-part series on key informant interviews! I hope by now you feel comfortable planning, conducting, and analyzing key informant interviews.

Until next time!

Do you have any tips to share for analyzing and using key informant interview data? Please share your experience below!

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Exploring health care providers’ engagement in prevention and management of multidrug resistant Tuberculosis and its factors in Hadiya Zone health care facilities: qualitative study

• Bereket Aberham Lajore 1   na1   nAff5 ,
• Yitagesu Habtu Aweke 2   na1   nAff6 ,
• Samuel Yohannes Ayanto 3   na1   nAff7 &
• Menen Ayele 4   nAff5  

BMC Health Services Research volume  24 , Article number:  542 ( 2024 ) Cite this article

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Engagement of healthcare providers is one of the World Health Organization strategies devised for prevention and provision of patient centered care for multidrug resistant tuberculosis. The need for current research question rose because of the gaps in evidence on health professional’s engagement and its factors in multidrug resistant tuberculosis service delivery as per the protocol in the prevention and management of multidrug resistant tuberculosis.

The purpose of this study was to explore the level of health care providers’ engagement in multidrug resistant tuberculosis prevention and management and influencing factors in Hadiya Zone health facilities, Southern Ethiopia.

Descriptive phenomenological qualitative study design was employed between 02 May and 09 May, 2019. We conducted a key informant interview and focus group discussions using purposely selected healthcare experts working as directly observed treatment short course providers in multidrug resistant tuberculosis treatment initiation centers, program managers, and focal persons. Verbatim transcripts were translated to English and exported to open code 4.02 for line-by-line coding and categorization of meanings into same emergent themes. Thematic analysis was conducted based on predefined themes for multidrug resistant tuberculosis prevention and management and core findings under each theme were supported by domain summaries in our final interpretation of the results. To maintain the rigors, Lincoln and Guba’s parallel quality criteria of trustworthiness was used particularly, credibility, dependability, transferability, confirmability and reflexivity.

Total of 26 service providers, program managers, and focal persons were participated through four focus group discussion and five key informant interviews. The study explored factors for engagement of health care providers in the prevention and management of multidrug resistant tuberculosis in five emergent themes such as patients’ causes, perceived susceptibility, seeking support, professional incompetence and poor linkage of the health care facilities. Our findings also suggest that service providers require additional training, particularly in programmatic management of drug-resistant tuberculosis.

The study explored five emergent themes: patient’s underlying causes, seeking support, perceived susceptibility, professionals’ incompetence and health facilities poor linkage. Community awareness creation to avoid fear of discrimination through provision of support for those with multidrug resistant tuberculosis is expected from health care providers using social behavioral change communication strategies. Furthermore, program managers need to follow the recommendations of World Health Organization for engaging healthcare professionals in the prevention and management of multidrug resistant tuberculosis and cascade trainings in clinical programmatic management of the disease for healthcare professionals.

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Introduction

Mycobacterium tuberculosis, the infectious agent that causes multi-drug resistant tuberculosis (MDR-TB), is resistant to at least rifampicin and isoniazid. Direct infection can cause the disease to spread, or it can develop secondary to improper management of tuberculosis among drug susceptible tuberculosis cases and associated poor adherence [ 1 ].

Multidrug-resistant strains of mycobacterium tuberculosis have recently emerged, which makes achieving “End TB Strategy” more difficult [ 2 ]. Multi drug resistant tuberculosis (MDR-TB) has been found to increasingly pose a serious threat to global and Ethiopian public health sector. Despite the fact that a number of risk factors for MDR-TB have been identified through various research designs, the epidemiology of this disease is complex, contextual, and multifaceted [ 1 ]. Quantitative studies demonstrate that prior treatment history [ 3 , 4 , 5 , 6 , 7 ], interrupted drug supply [ 8 ], inappropriate treatments and poor patient compliance [ 3 , 7 , 9 ], poor quality directly observed treatment short course (DOTS), poor treatment adherence [ 10 ], age [ 5 ], and malnutrition [ 11 ] were factors associated with multi drug resistant TB.

Globally, an estimated 20% of previously treated cases and 3.3% of new cases are thought to have MDR-TB; these levels have essentially not changed in recent years. Globally, 160,684 cases of multidrug-resistant TB and rifampicin-resistant TB (MDR/RR-TB) were notified in 2017, and 139,114 cases were enrolled into treatment in 2017 [ 12 ]. A systematic review in Ethiopia reported 2% prevalence of MDR-TB [ 3 ] that is higher than what is observed in Sub-Saharan Africa, 1.5% [ 13 ]. The prevalence of MDR-TB, according to the national drug-resistant tuberculosis (DR-TB) sentinel report, was 2.3% among newly diagnosed cases of TB and 17.8% among cases of TB who had already received treatment,. This suggests a rising trend in the prevalence of TB drug resistance compared to the results of the initial drug-resistant TB survey carried out in Ethiopia from 2003 to 2005 [ 14 ].

Ethiopia has placed strategies into place that emphasize political commitment, case finding, appropriate treatment, a continuous supply of second-line anti-TB medications of high quality, and a recording system. Due to other competing health priorities, the nation is having difficulty accelerating the scale-up of the detection, enrollment and treatment of drug-resistant TB patients [ 15 , 16 ]. To address these issues, the nation switched from a hospital-based to a clinic-based ambulatory model of care, which has allowed MDR-TB services to quickly decentralize and become more accessible. Accordingly, the nation has set up health facilities to act as either treatment initiating centers (TIC) or treatment follow-up centers (TFC) or both for improved referral and communication methods [ 15 ].

One of the key components of the “End TB strategy” is engagement of health care professionals in the prevention and management of multidrug resistant tuberculosis [ 17 ]. Inadequate engagement of healthcare providers is one aspect of the healthcare system that negatively influences MDR-TB prevention and control efforts [ 17 ]. This may be manifested in a number of ways, including inadequate understanding of drug-resistant tuberculosis, improper case identification, failure to initiate treatment again, placement of the wrong regimens, improper management of side effects and poor infection prevention [ 1 ]. These contributing factors are currently being observed in Ethiopia [ 18 ], Nigeria [ 7 , 19 , 20 ] and other countries [ 21 , 22 ]. According to a study conducted in Ethiopia, MDR-TB was linked to drug side effects from first-line treatments, being not directly observed, stopping treatment for at least a day, and retreating with a category II regimen [ 17 ].

This may be the result of a synergy between previously investigated and other contextual factors that have not yet been fully explored, such as professional engagement, beliefs, and poor preventive practices. The engagement of health professionals in MDR-TB prevention and control is assessed using a number of composite indicators. Health professionals may interact primarily inside the healthcare facilities. Typically, they play a significant role in connecting healthcare services with neighborhood-based activities [ 17 ]. One of the main research areas that have not sufficiently addressed is evidence indicating the status of healthcare professionals’ engagement and contextual factors in MDR-TB prevention and management.

It is increasingly urgent to identify additional and existing factors operating in a particular context that contribute to the development of the disease in light of the epidemic of drug resistance, including multi-drug resistance (MDR-TB) and extensively drug resistant TB (XDR-TB) in both new and previously treated cases of the disease [ 23 ]. In order to develop and implement control measures, it is therefore essential to operationally identify a number of contextual factors operating at the individual, community, and health system level.

Therefore, the overall purpose of this study was to explore the level of engagement of health care providers and contextual factors hindering/enabling the prevention and provision of patient-centered care for MDR-TB in health facilities, DOTS services centers and MDR-TB treatment initiation center [TIC], in Hadiya Zone, Southern Ethiopia.

Qualitative approach and research paradigm

Descriptive phenomenological qualitative study design was employed to explore factors influencing engagement of health professionals in MDR-TB prevention and management and thematic technique was employed for the analysis of the data.

Researchers’ characteristics and reflexivity

Three Principal investigators conducted this study. Two of them had Masters of public health in Epidemiology and Reproductive health and PhD candidates and the third one had Bachelor’s degree in public health with clinical experience in the area of Tuberculosis prevention and management and MPH in Biostatistics. The principal investigators have research experience with published articles in different reputable journals. There were no prior contacts between researchers and participants before the study whereas researchers have built positive rapport with study participants during data collection to foster open communication and trust and had no any assumptions and presuppositions about the research topic and result.

Context/ study setting and period

The study was conducted between 2 and 9 May, 2019 in Hadiya Zone with more than 1.7 million people residing in the Zone. There are 300 health posts, 63 health centers, 3 functional primary hospitals and 1 comprehensive specialized hospital in the Zone. Also, there are more than 350 private clinics and 1 private hospital in the Zone. All of the public health facilities and some private health facilities provide directly observed short course treatment (DOTS) service for tuberculosis patients. There are more than eight treatment initiation centers (TICs) for MDR-TB patients in Hadiya Zone. MDR-TB (Multidrug-resistant tuberculosis) treatment initiation centers are specialized facilities that provide comprehensive care, diagnosis and treatment initiation, psychosocial support, and follow up services to individuals with MDR-TB. The linkage between MDR-TB treatment initiation centers and other healthcare facilities lies in the coordination of care, referral pathways, and collaboration to ensure comprehensive and integrated care for individuals with MDR-TB. Overall, healthcare providers play a crucial role in the management of MDR-TB by providing specialized care, ensuring treatment adherence, monitoring progress and outcomes, and supporting individuals in achieving successful treatment outcomes and improved health.

Units of study and sampling strategy

Our study participants were health care professionals working in MDR-TB TICs in both private and public health facilities, and providing DOTS services, MDR-TB program leaders in treatment initiation centers, as well as TB focal persons, disease prevention and health promotion focal person, and project partners from district health offices. The study involved four focus group discussion (FGDs) and five key informants’ interview (KII) with a total of 26 participants to gather the necessary information. Expert purposive sampling technique was employed and sample size was determined based on the saturation of idea required during data collection process.

Data collection methods and instruments

Focus group discussion and face to face key informants’ interviews were employed to collect the data. We conducted a total of four FGD and five key informants’ interviews with participants chosen from DOTS providing health facilities and MDR-TB program leaders in treatment initiation centers, as well as TB focal persons and project partners from district health offices and disease prevention and health promotion focal person. One of the FGDs was conducted among health professionals from the public MDR-TB treatment initiation centers. Three FGDs were conducted among disease prevention and health promotion focal persons, TB focal persons and DOTS providers in public health facilities (health centers).

An observation checklist was developed to assess the general infection prevention and control measures used by specific healthcare facilities in the study area. We used unstructured FGD guide, key informant interview guide, observation checklist and audio recorders to collect primary data and it was collected using local language called Amharic. Prior to data collection, three people who are not among principal investigators with at least a master’s degree in public health and prior experience with qualitative research were trained by principal investigators. Three of them acts as a tape recorder, a moderator, and as a note taker alternatively. The length of FGD ranged from 58 to 82 min and that of key informants’ interview lasted from 38 to 56 min.

Data processing and data analysis

Memos were written immediately after interviews followed by initial analysis. Transcription of audio records was performed by principal investigators. The audio recordings and notes were refined, cleaned and matched at the end of each data collection day to check for inconsistencies, correct errors, and modify the procedures in response to evolving study findings for subsequent data collection. Transcribed interviews, memos, and notes from investigator’s observation were translated to English and imported to Open Code 4.02 [ 2 ] for line by line coding of data, and categorizing important codes (sub theming). The pre-defined themes for MDR-TB prevention and control engagement were used to thematize the line-by-line codes, categories, and meanings using thematic analysis. Finally, the phenomenon being studied was explained by emerging categories and themes. Explanations in themes were substantiated by participants’ direct quotations when necessary.

Trustworthiness

Phone calls and face to face briefing were requested from study participants when some expressions in the audio seems confusing while transcripts were performed. To ensure the credibility of the study, prolonged engagement was conducted, including peer debriefing with colleagues of similar status during data analysis and inviting available study participants to review findings to ensure as it is in line with their view or not. Memos of interviews and observation were crosschecked while investigator was transcribing to ensure credibility of data as well as to triangulate investigator’s categorizing and theming procedures. For transferability, clear outlines of research design and processes were provided, along with a detailed study context for reader judgment. Dependability was ensured through careful recording and transcription of verbal and non-verbal data, and to minimize personal bias, scientific procedures were followed in all research stages. Conformability was maintained by conducting data transcription, translation, and interpretation using scientific methods. Researchers did all the best to show a range of realities, fairly and faithfully. Finally, an expert was invited to put sample of codes and categories to emerged corresponding categories and themes respectively.

Demographic characteristics of study participants

Four focus group discussions and five key informants’ interviews were conducted successfully. There were 26 participants in four focus group discussions, and key informants’ interview. Ages of participants ranges from 20 to 50 years with an average age of 33.4  ±  6.24 SD years. Participants have five to ten years of professional experience with DOTS services (Table  1 ).

Emergent themes and subthemes

The study explored how health care providers’ engagement in MDR-TB prevention and management was influenced. The investigation uncovered five major themes. These themes were the patient’s underlying causes, seeking support, perceived susceptibility, healthcare providers’ incompetence, and poor linkage between health facilities. Weak community TB prevention, health system support, and support from colleagues were identified subthemes in the search for help by health professionals whereas socioeconomic constraints, lack of awareness, and fear of discrimination were subthemes under patients underlying factors (Fig.  1 ).

Themes and subthemes emerged from the analysis of health professionals’ engagement in MDR-TB prevention and management study in Hadiya zone’s health facilities, 2019

The patient’s underlying causes

This revealed why TB/MDR-TB treatment providers believe health professionals are unable to provide standard MDR-TB services. The subthemes include TB/MDR-TB awareness, fear of discrimination, and patients’ socioeconomic constraints.

Socioeconomic constraints

According to our research, the majority of healthcare professionals who provided directly observed short-course treatment services mentioned socioeconomic constraints as barriers to engage per standard and provide MDR-TB prevention and management service. More than half of the participants stated that patients’ primary reasons include lack of money for house rental close to the treatment centers, inability to afford food and other expenses, and financial constraints to cover transportation costs.

In addition to this, patients might have additional responsibilities to provide food and cover other costs for their families’ need. The majority of health care professionals thought that these restrictions led to their poor engagement in MDR-TB prevention and management. One of the focus groups’ discussants provided description of the scenario in the following way:

“…. I have many conversations with my TB/MDR-TB patients. They fail to complete DOTS or treatment intensive care primarily as a result of the requirement of prolonged family separation. They might provide most of the family needs, including food and other expenses” (FGD-P01).

Lack of awareness about MDR-TB

This subtheme explains how MDR-TB patients’ knowledge of the illness can make it more difficult for health professionals to provide DOTS or TICs services. The majority of DOTS providers stated that few TB or MDR-TB patients were aware of how MDR-TB spreads, how it is treated, and how much medication is required. Additionally, despite the fact that they had been educated for the disease, majority of patients did not want to stop contact with their families or caregivers. A health care provider stated,

“…. I provided health education for MDR-TB patients on how the disease is transmitted and how they should care for their family members. They don’t care; however, give a damn about their families .” (FGD-P05).

Some healthcare professionals reported that some patients thought that MDR-TB could not be cured by modern medication. One medical professional described the circumstance as follows:

“…. I noticed an MDR-TB patient who was unwilling to be screened. He concluded that modern medication is not effective and he went to spiritual and traditional healers” (FGD-P02).

As a result, almost all participants agreed on the extent to which patient knowledge of TB and MDR-TB can influence a provider’s engagement to MDR-TB services. The majority suggested that in order to improve treatment outcomes and preventive measures, the media, community leaders, health development armies, one-to-five networks, non-governmental organizations, treatment supporters, and other bodies with access to information need to put a lot of efforts.

Fear of discrimination

According to our research, about a quarter of healthcare professionals recognized that patients’ fear of discrimination prevents them from offering MDR-TB patients the DOTS services they need, including counseling index cases and tracing contact histories.

HEWs, HDAs, and 1-to-5 network members allegedly failed to monitor and counsel the index cases after their immediate return to their homes, according to the opinions from eight out of twenty-six healthcare professionals. The patients began to engage in routine social and political activities with neighbors while hiding their disease status. A healthcare professional described this situation as follows:

“…. I understood from my MDR-TB patient’s words that he kept to himself and avoided social interaction. He made this decision as a result of stigmatization by locals, including health extension workers. As a result, the patient can’t attend social gatherings. …. In addition, medical professionals exclude MDR-TB patients due to fear of exposures. As a result, patients are unwilling to undergo early screening” (FGD-P04).

Professionals’ perceived risk of occupational exposure

This theme highlights the anxiety that healthcare workers experience because of MDR-TB exposure when providing patient care. Our research shows that the majority of health professionals viewed participation as “taking coupons of death.” They believed that regardless of how and where they engaged in most healthcare facilities, the risk of exposure would remain the same. According to our discussion and interview, lack of health facility’s readiness takes paramount shares for the providers’ risk of exposures and their susceptibility.

According to the opinion from the majority of FGD discussants and in-depth interviewees, participants’ self-judgment score and our observation, the majority of healthcare facilities that offer DOTS for DS-TB and MDR-TB did not create or uphold standards in infection prevention in the way that could promote better engagement. These include poor maintenance of care facilities, lack of personal protective equipment, unsuitable facility design for service provision, lack of patient knowledge regarding the method of MDR-TB transmission, and lack of dedication on the part of health care staff.

As one of our key informant interviewees [District Disease Prevention Head], described health professionals’ low engagement has been due to fear of perceived susceptibility. He shared with us what he learned from a community forum he moderated.

Community forum participant stated that “… There was a moment a health professional run-away from the TB unit when MDR-TB patient arrived. At least they must provide the necessary service, even though they are not willing to demonstrate respectful, compassionate, or caring attitude to MDR-TB patients” (KII-P01). Besides , one of the FGD discussants described the circumstance as follows:

“…. Emm…. Because most health facilities or MDR-TB TIC are not standardized, I am concerned about the risk of transmission. They are crammed together and poor ventilation is evident as well as their configuration is improper. Other medical services are causing the TICs to become overcrowded. Most patients and some medical professionals are unconcerned with disease prevention ” (FGD-P19).

Participants’ general fear of susceptibility may be a normal psychological reaction and may serve as a motivation for taking preventative actions. However, almost all participants were concerned that the main reasons for their fear were brought up by the improper application of programmatic management and MDR-TB treatment standards and infection prevention protocols in healthcare facilities.

Health care providers’ incompetence

This theme illustrates how professionalism and dedication impact participation in MDR-TB prevention and management. The use of DS-TB prevention and management by health professionals was also taken into account because it is a major factor in the development of MDR-TB. This theme includes the participants’ perspectives towards other healthcare workers involved in and connected to MDR-TB.

Nearly all of the participants were aware of the causes and danger signs of MDR-TB. The majority of the defined participants fit to the current guidelines. However, participants in focus groups and key informant interviews have brought up shortcomings in MDR-TB service delivery practice and attitude. We looked at gaps among healthcare professionals’ knowledge, how they use the national recommendations for programmatic management and prevention of MDR-TB, prevent infections, take part in community MDR-TB screenings, and collaborate with other healthcare professionals for better engagement.

More than half of the participants voiced concerns about their attitudes and skill sets when using MDR-TB prevention and management guideline. When asked about his prior experiences, one of the focus group participants said:

“…. Ok, let me tell you my experience, I was new before I attended a training on MDR-TB. I was unfamiliar with the MDR-TB definition given in the recommendations. When I was hired, the health center’s director assigned me in the TB unit. I faced difficulties until I received training” (FGD-P24). Furthermore , one of the key informant interview participants shared a story: “…. In my experience, the majority of newly graduated health professionals lack the required skill. I propose that pre-service education curricula to include TB/MDR-TB prevention and management guideline trainings” (KII-P01).

The majority of participants mentioned the skill gap that was seen among health extension workers and laboratory technicians in the majority of healthcare facilities. Some of the participants in the in-depth interviews and FGD described the gaps as follows:

“…. According to repeated quality assurance feedbacks, there are many discordant cases in our [ District TB Focal Person ] case. Laboratory technicians who received a discrepant result (KII-P01) are not given training which is augmented by shared story from FGD discussants, “According to the quality assurance system, laboratory technicians lack skill and inconsistent results are typical necessitating training for newly joining laboratory technicians” (FGD-P20).

Through our discussions, we explored the level of DOTS providers’ adherence to the current TB/MDR-TB guideline. As a result, the majority of participants pointed out ineffective anti-TB management and follow-up care. One of the participants remembered her practical experience as follows:

“…. In my experience, the majority of health professionals fail to inform patients about the drug’s side effects, follow-up procedures, and other techniques for managing the burden of treatment. Only the anti-TB drug is provided, and the patient is left alone. The national treatment recommendation is not properly implemented by them” (FGD-P04).

Many barriers have been cited as reasons that might have hindered competencies for better engagement of health professionals. Training shortage is one of the major reasons mentioned by many of the study participants. One of discussants from private health facility described the problem as

“…. We are incompetent, in my opinion. Considering that we don’t attend update trainings. Many patients who were diagnosed negative at private medical facilities turned out to be positive, and vice versa which would be risky for drug resistance” (FGD-P14) which was supported by idea from a participant in our in-depth interview: “…. We [Program managers] are running short of training for our health care providers at different health centers and revealed that four out of every five healthcare professionals who work in various health centers are unaware of the TB/MDR-TB new guideline” (KII-P02).

Seeking support

This theme focuses on the significance and effects of workplace support in the engagement of MDR-TB prevention and control. This also explains the enabling and impeding elements in the engagement condition of health professionals. Three elements make up the theme: coworkers (other health professionals) in the workplace, support from community TB prevention actors, and a healthcare system.

Support from community TB prevention actors

This subtheme includes the assistance provided to study participants by important parties such as community leaders, the health development army, and other stakeholders who were involved in a community-based TB case notification, treatment adherence, and improved patient outcomes.

Many of the study participants reported that health extension workers have been poorly participating in MDR-TB and TB-related community-based activities like contact tracing, defaulter tracing, community forums, health promotion, and treatment support. One study participant described their gap as follows:

“…. I understood that people in the community were unaware of MDR-TB. The majority of health extension workers do not prioritize raising community awareness of MDR-TB” (FGD-P13). This was supported by idea from a district disease prevention head and stated as: “…. There is no active system for contacts tracing. Health educators send us information if they find suspected cases. However, some patients might not show up as expected. We have data on three family members who tested positive for MDR-TB” (KII-P3).

Support from a health system

The prime focus of this subtheme is on the enabling elements that DOTS providers require assistance from the current healthcare system for better engagement. All study participants expressed at least two needs to be met from the health system in order for them to effectively participate in MDR-TB prevention, treatment, and management. All study participants agreed that issues with the health system had a negative impact on their engagement in the prevention, treatment, diagnosis, and management of MDR-TB in almost all healthcare facilities. Poor conditions in infrastructure, resources (supplies, equipment, guidelines, and other logistics), capacity building (training), supportive supervision, establishment of public-private partnerships, and assignment of motivated and trained health professionals are some of the barriers that needs to be worked out in order to make them engage better. One of the participants pronounces supplies and logistics problems as:

“…. The health center I worked in is listed as a DOTS provider. However, it lacks constant electricity, a working microscope, lab supplies, medications, etc, and we refer suspected cases to nearby health centers or district hospitals for AFB-examination and, “Sometimes we use a single kit for many patients and wait for the medication supply for three or more weeks and patients stops a course of therapy that might induce drug resistance” (FGD-PI04) which was augmented by statement from FGD participant who works at a treatment initiation center: “…. We faced critical shortage of supplies and hospital administrators don’t care about funding essential supplies for patient care. For instance, this hospital (the hospital in which this FGD was conducted) can easily handle N-95 masks. Why then they (hospital administrators working in some TIC) can’t do it?” (FGD-P18).”

Regarding in-service training on MDR-TB, almost all participants pointed out shortage of on-job training mechanisms. One of our FGD participants said:

“…. I missed the new training on MDRTB programmatic management guidelines. I’ve heard that new updates are available. I still work using the old standard” (FGD-PI05). A health professional working in private clinic heightens the severity of training shortage as: “…. We have not participated in TB/MDR-TB guidelines training. You know, most of for-profit healthcare facilities do not provide any training for their staff. I’m not sure if I’m following the (TB/MDR-TB) guideline” (FGD-P14). One of our key informant interview participants; MDR-TB center focal person suggested the need for training as: “…. I’ve received training on the MDR-TB services and public-private partnership strategy. It was crucial in my opinion for better engagement. It is provided for our staff [MDRTB center focal person]. However, this has not yet been expanded to other health facilities” (KII-P04).

Concerning infrastructures, transportation problem was one of the frequently mentioned obstacles by many participants that hinder engagement in MDR-TB/TB service. This factor had a negative impact to both sides (health professionals and patients). One of discussants said:

“…. I face obstacles such as transport cost to perform effective TB/MDR-TB outreach activities like health education, tracing family contacts and defaulters and community mobilization. Rural kebeles are far apart from each other. How can I support 6 rural Kebeles?” (FGD-P01). One of the participants; MDR-TB treatment centers supervisor/program partner seconded the above idea as: “…. I suggest government must establish a system to support health professionals working in remote health care facilities in addition to MDR-TB centers. I guess there are more than 30 government health centers and additional private clinics. We can’t reach them all due to transportation challenges” (KII-P05). One of the participants , a district disease prevention head added: “…. Our laboratory technicians take sample from MDR-TB suspects to the post office and then, the post office sends to MDR-TB site. Sometimes, feedback may not reach timely. There is no any system to cover transportation cost. That would make case detection challenging” (FGD-P02).

Support from colleagues

Study participants stated the importance of having coworker with whom they could interconnect. However, eight participants reported that they were discriminated by their workmates for various reasons, such as their perceived fear of exposure to infection and their perception as if health professionals working in TB/MDR-TB unit get more training opportunities and other incentives. One of the focus group discussants said:

“…. My colleagues [health professional working out of MDR-TB TICs] stigmatize us only due to our work assignment in MDR-TB clinic. I remember that one of my friends who borrowed my headscarf preferred to throw it through a window than handing-over it back safely. Look, how much other health professionals are scared of working in MDR-TB unit. This makes me very upset. I am asking myself that why have I received such training on MDR-TB?” (FGD-P04).

Some of the participants also perceived that, health professionals working in MDR-TB/TB unit are the only responsible experts regarding MDR-TB care and treatment. Because, other health professionals consider training as if it is an incentive to work in such units. One of the FGD discussants described:

“… Health professionals who work in other service units are not volunteer to provide DOTS if TB focal person/previously trained staffs are not available. Patients wait for longer time” (FGD-P11).

Health facilities’ poor linkage

This theme demonstrates how various healthcare facilities, including private and public healthcare facilities such as, health posts, health care centers and hospitals, and healthcare professionals working at various levels of the healthcare system in relation to TB/MDR-TB service, are inter-linked or communicating with one another.

Many study participants noted a lack of coordination between higher referral hospitals, TB clinics, health posts, and health centers. Additionally, the majority of the assigned healthcare professionals had trouble communicating with patients and their coworkers. A focus group discussant also supported this idea as

“…. There is a lack of communication between us [DOTS providers at treatment initiation centers] and health posts, health centers, and private clinics. We are expected to support about 30 public health facilities. It’s of too much number, you know. They are out of our reach. We only took action when a problem arose” (FGD-P16).

Significant number of participants had raised the problem of poor communication between health facilities and treatment initiation centers. One of the interviewees [program manager] said:

“…. I see that one of our challenges is the weak referral connections between treatment initiation centers and health centers. As a result, improper sample transfer to Gene- Xpert sites and irregular postal delivery are frequent” . “Our; DOTS staff at the MDR-TB center, DOTS staff at the health center, and health extension workers are not well connected to one another. Many patients I encountered came to this center [MDR-TB center] after bypassing both health post and health center. Poor linkage and communication, in my opinion, could be one of the causes. The same holds true for medical facilities that are both public and private ” (KII-P02).

Engagement of individual healthcare providers is one of the peculiar interventions to achieve the goal of universal access to drug resistance tuberculosis care and services [ 17 ]. Healthcare providers engagement in detecting cases, treating and caring for multidrug resistant tuberculosis (MDR-TB) may be influenced by various intrinsic (individual provider factors) and extrinsic (peer, health system, political and other factors) [ 15 ]. Our study explored engagement of individual DOTS providers and factors that influence their engagement in MDR-TB prevention and management service. This is addressed through five emergent themes and subthemes as clearly specified in our results section.

The findings showed patients’ socioeconomic constraints were important challenges that influence health professionals’ engagement, and provision of MDR-TB prevention and management services. Although approaches differ, studies in Ethiopia [ 24 ], South Africa [ 25 ] and India [ 26 , 27 ] documented that such factors influence health providers’ engagement in the prevention and management of multi drug resistant tuberculosis. Again, the alleviation of these factors demands the effort from patients, stakeholders working on TB, others sectors, and the healthcare system so that healthcare providers can deliver the service more effectively in their day-to-day activities and will be more receptive to the other key factors.

We explored participants’ experiences on how patients’ awareness about drug sensitive or multi drug resistant tuberculosis influenced their engagement. Accordingly, participants encountered numerous gaps that restricted their interactions with TB/MDR-TB patients. In fact, our study design and purposes vary, studies [ 28 , 29 , 30 ] indicated that patients awareness influenced providers decision in relation to MDR-TB services and patients’ awareness status is among factors influencing healthcare providers’ decision making about the care the MDR-TB patient receives. As to our knowledge, patients’ perceived fear of discrimination was not documented whether it had direct negative impact on reducing providers’ engagement. Therefore, patients’ awareness creation is an important responsibility that needs to be addressed by the community health development army, health extension workers, all other healthcare providers and stakeholder for better MDR-TB services and patient outcomes.

Our study indicates that healthcare providers perceived that they would be exposed to MDR-TB while they are engaged. Some of the participants were more concerned about the disadvantages of engagement in providing care to MDR-TB patients which were predominantly psychological and physical pressure. In this context, the participants emphasized that engagement in MDR-TB patient care is “always being at risk” and expressed a negative attitude. This finding is similar to what has been demonstrated in a cross-sectional study conducted in South Africa in which majority of healthcare providers believed their engagement in MDR-TB services would risk their health [ 21 ].

However, majority of the healthcare providers demonstrated perceived fear of exposures mainly due to poor infection prevention practices and substandard organization of work environment in most TB/MDR-TB units. This is essentially reasonable fear, and needs urgent intervention to protect healthcare providers from worsening/reducing their effective engagement in MDR-TB patient care. On the other side of the coin, perceived risk of occupational exposure to infection could be source for taking care of oneself to combat the spread of the infection.

In our study, healthcare provider’s capability (competence) also had an impact on their ability to engage in prevention and management of MDR-TB. Here, participants had frequently raised their and other healthcare providers’ experience regarding skill gaps, negative attitude towards the service unit they were working in, ineffective use of MDR-TB guideline, poor infection prevention practices and commitment. In addition, many health professionals report serious problems regarding case identification and screening, drug administration, and side effect management. These findings were supported by other studies in Ethiopia [ 7 ] and in Nigeria [ 19 , 20 ]. This implies an urgent need for training of health care worker on how to engage in prevention and management of multidrug resistant TB.

Moreover, our findings provide insights into the role of community TB prevention actors, currently functioning health system, and colleagues and other stakeholders’ regarding healthcare providers’ engagement. Participants emphasized that support from community TB prevention actors is a key motivation to effectively engage on management and prevention roles towards MDR-TB. Evidence shows that community TB prevention is one of the prominent interventions that study participants would expect in DOTS provision as community is the closest source of information regarding the patients [ 31 , 32 ].

Similarly, all participants had pointed out the importance of support from a health system directly or indirectly influence their engagement in the prevention, diagnosis, treatment, and management of MDR-TB. Researches indicated that health system supports are enabling factors for healthcare providers in decision making regarding TB/MDR-TB prevention and treatment [ 33 ]. This problem is documented by the study done in Ethiopia [ 22 ]. In addition, support from colleagues and other stakeholders was also a felt need to engage in MDR-TB which was supported by the World Health Organization guideline which put engagement in preventing MDR-TB and providing patients centered care needs collaborative endeavor among healthcare providers, patients, and other stakeholders [ 17 ].

Participants showed that there were poor linkage among/within DOTS providers working in health post (extension workers), health centers, hospitals and MDRTB treatment initiation centers. Our finding is consistent with a research in South Africa which shows poor health care attitude is linked to poor treatment adherence [ 34 ]. Our study implies the need for further familiarization especially on clinical programmatic management of drug resistant tuberculosis. Moreover, program managers need to follow health professionals’ engagement approaches recommended by the World Health Organization: End TB strategy [ 17 ].

Limitations of the study

There are some limitations that must be explicitly acknowledged. First, participants from private health facilities were very few, which might have restricted the acquisition and incorporation of perspectives from health care providers from private health care facilities. Second, healthcare providers’ engagement was not measured from patient side given that factors for engagement may differ from what has been said by the healthcare provides. Third, power relationships especially among focus group discussant in MDR-TB treatment initiation centers might have influenced open disclosures of some sensitive issues.

The study showed how healthcare provider’s engagement in MDR-TB management and prevention was influenced. Accordingly, patient’s underlying causes, seeking support, perceived occupational exposure, healthcare provider’s incompetence and health facilities poor linkage were identified from the analysis. Weak community TB prevention efforts, poor health system support and support from colleagues, health care providers’ incompetence and health facilities poor linkage were among identified factors influencing engagement in MDR – TB prevention and management. Therefore, measures need to be in place that avert the observed obstacles to health professionals’ engagement including further quantitative studies to determine the effects of the identified reasons and potential factors in their engagement status.

Furthermore, our findings pointed out the need for additional training of service providers, particularly in clinical programmatic management of drug-resistant tuberculosis. Besides, program managers must adhere to the World Health Organization’s recommendations for health professional engagement. Higher officials in the health sector needs to strengthen the linkage between health facilities and service providers at different levels. Community awareness creation to avoid fear of discrimination including provision of support for those with MDR-TB is expected from health experts through implementation of social behavioral change communication activities.

Abbreviations

Directly observed treatment short-course

Drug susceptible tuberculosis

Millennium development goals

Multidrug resistant tuberculosis

Sustainable development goals

Tuberculosis

Treatment initiation center

World Health Organization

Extensively drug resistant TB

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Acknowledgements

We would like to acknowledge Hosanna College of Health Sciences Research and community service directorate for providing us the opportunity and necessary fund to conduct this research. Our appreciation also goes to heads of various health centers, hospitals, district health and Hadiya Zone Health office for unreserved cooperation throughout data collection.

The authors declare that this study received funding from Hosanna College of Health Sciences. The funder was not involved in the study design, collection, analysis, interpretation of data, the writing of this article or the decision to submit it for publication.

Author information

Bereket Aberham Lajore & Menen Ayele

Present address: Hossana College of Health Sciences, Hosanna, SNNPR, Ethiopia

Yitagesu Habtu Aweke

Present address: College of Health Sciences, School of Public Health, Addis Ababa University, Addis Ababa, Ethiopia

Samuel Yohannes Ayanto

Present address: College of Health Sciences, Institute of Public Health, Department of -Population and Family Health, Jimma University, Jimma, Ethiopia

Bereket Aberham Lajore, Yitagesu Habtu Aweke and Samuel Yohannes Ayanto contributed equally to this work.

Authors and Affiliations

Department of Family Health, Hossana College of health sciences, Hossana, Ethiopia

Bereket Aberham Lajore

Department of Health informatics, Hossana College of Health Sciences, Hossana, Ethiopia

Department of Midwifery, Hossana College of Health Sciences, Hossana, Ethiopia

Department of Clinical Nursing, Hossana College of Health Sciences, Hossana, Ethiopia

Menen Ayele

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Contributions

Bereket Aberham Lajore, Yitagesu Habtu Aweke, and Samuel Yohannes Ayanto conceived the idea and wrote the proposal, participated in data management, analyzed the data and drafted the paper and revised the analysis and subsequent draft of the paper. Menen Ayele revised and approved the proposal, revised the analysis and subsequent draft of the paper. Yitagesu Habtu and Bereket Aberham Lajore wrote the main manuscript text and prepared all tables. All authors reviewed and approved the final manuscript.

Corresponding author

Correspondence to Bereket Aberham Lajore .

Ethics declarations

All methods and report contents were performed in accordance with the standards for reporting qualitative research.

Ethics approval and consent to participate

Ethical approval was obtained from Institutional review board [IRB] of Hossana College of health sciences after reviewing the protocol for ethical issues and provided a formal letter of permission to concerned bodies in the health system. Accordingly, permission to conduct this study was granted by respective health facilities in Hadiya zone. Confidentiality of the information was assured and participants’ autonomy not to participate or to opt-out at any stage of the interview were addressed. Finally, informed consent was obtained from the study participants after detailed information.

Competing interests

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Lajore, B.A., Aweke, Y.H., Ayanto, S.Y. et al. Exploring health care providers’ engagement in prevention and management of multidrug resistant Tuberculosis and its factors in Hadiya Zone health care facilities: qualitative study. BMC Health Serv Res 24 , 542 (2024). https://doi.org/10.1186/s12913-024-10911-6

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Understanding referral of patients with cancer in rural Ethiopia: a qualitative study

• Josephin Trabitzsch 1 ,
• Morena Marquardt 1 ,
• Sarah Negash 1 ,
• Winini Belay 1 , 2 ,
• Yonas Abebe 2 , 3 ,
• Edom Seife 4 ,
• Kunuz Abdella 3 ,
• Muluken Gizaw 1 , 2 ,
• Sefonias Getachew 1 , 2 ,
• Adamu Addissie 1 , 2 ,
• Eva Johanna Kantelhardt 1 , 5 &
• Abigiya Wondimagegnehu 1 , 2  

BMC Cancer volume  24 , Article number:  553 ( 2024 ) Cite this article

Metrics details

Cancer incidence is increasing in Ethiopia mainly due to increased life expectancy, while oncological capacities remain limited. Strong referral linkages between different levels of the healthcare system are key to provide timely access to cancer care. In this qualitative study, we assessed limitations and potential of cancer patient referral in the rural Southwest of Ethiopia.

We held four focus group discussions (FGD) with health professionals at one primary and three secondary hospitals and conducted eight in-depth interviews (IDI) with the hospitals´ medical executives and local health bureau representatives. Data was analysed inductively using thematic analysis and emerging themes were categorized within the revised concept of access by Penchansky and Saurman.

The inevitable referral of patients with cancer in the rural Southwest of Ethiopia is characterized by the absence of clear communication protocols and the lack of formal referral linkages. The newly implemented hub-system has improved emergency referrals and could be expanded to non-emergency referrals, sensitive to the needs of advanced oncological care. Liaison officers can pave the way but need to be trained and equipped adequately. Referred patients struggle with inadequate transportation systems, the lack of accommodation close to specialized facilities as well as the inability to navigate at those sites due to language barriers, illiteracy, and stigmatization. Few Non-Governmental Organizations (NGOs) help but cannot compensate the limited governmental support. The shortage of medications at public hospitals leads to patients being directed to costly private pharmacies. In the light of those challenges, cancer remains to be perceived as a “death sentence” within the rural communities.

Conclusions

Standardized referral linkages and a multi-faceted support network throughout the cancer care continuum are necessary to make oncology care accessible to Ethiopia´s large rural population.

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Introduction

Referral of cancer patients between healthcare levels in Sub-Saharan Africa has often been described to be poorly coordinated, resulting in extended time to diagnosis and treatment initiation and contributing to the region´s high cancer mortality [ 1 , 2 , 3 ]. In 2015, Ethiopia launched its first National Cancer Control Plan aiming to reduce cancer mortality in the country by 15% by 2020. Since then, the Ethiopian government has invested heavily into oncology services, implementing prevention and screening initiatives as well as expanding diagnostic and treatment capacities. However, the availability of advanced oncology services remains limited to tertiary-level specialized hospitals located in the larger cities. Considering that 80% of the Ethiopian population are living in rural areas, strong referral linkages between rural primary and general hospitals and tertiary specialized hospitals in the cities are of particular importance to provide access to oncology care to Ethiopia´s large rural population [ 4 , 5 ].

Ethiopia´s healthcare system is divided into three tiers: Health posts, health centres and primary hospitals on the lowest level, general hospitals on the secondary level and specialized hospitals on the tertiary healthcare level [ 1 ]. In terms of cancer care, at primary- and secondary-level hospitals, cancer diagnosis mostly relies on clinical findings. An affirmative diagnosis is often only possible in cooperation with pathology facilities or specialized hospitals. Primary- and secondary-level hospitals provide basic surgery for common cancers, and some offer hormonal therapy (Tamoxifen) for breast cancer patients. For advanced surgery or chemotherapy patients have to be referred to tertiary-level specialized hospitals. At time of data collection, there was only one hospital (Tikur Anbessa Specialized Hospital) providing radiotherapy.

While literature on access to oncology care in Ethiopia is increasing, referral linkages specifically have rarely been studied [ 6 ]. Furthermore, most studies addressing access to cancer care in Ethiopia have been conducted at tertiary-level cancer centres, missing out on perspectives of primary and secondary level healthcare institutions [ 7 ].

In this study we aimed to achieve a comprehensive understanding of factors influencing referral of cancer patients from primary and secondary hospitals in the rural Southwest of Ethiopia. We included healthcare professionals and representatives from local health bureaus to capture their perceptions on the existing referral system and assessed their ideas for its development in the future.

Study design and ethical approval

This qualitative study was conducted in December 2020 at primary and secondary hospitals in the rural Southwest of Ethiopia. It is part of a larger project aiming to design, implement, and evaluate decentralized cancer care in Ethiopia. In the writing of this manuscript we followed the Consolidated criteria for reporting qualitative research (COREQ) [ 8 ].

The study was approved by the Institutional Review Board of the Addis Ababa University College of Health Science (ref: 041/20/SPH). Study participants gave their written informed consent before each interview or discussion. All data were handled confidentially and participants´ data were pseudonymized within the transcripts.

Participant selection and setting

The study took place at one primary and three secondary hospitals in the region of Southern Nations, Nationalities, and Peoples (Table  1 ).

On each site, we conducted one focus group discussions (FGD) among health professionals. Participants were sampled purposefully, based on their involvement into oncology care and patient referral. Six to ten healthcare professionals participated in each FGD. In addition, we conducted in-depth interviews (IDIs) with the medical executives of each hospital, as well as with representatives from the affiliated health bureaus. Participants were approached via phone-calls prior to the interviews. All but one of the priorly arranged discussions and interviews took place; one medical executive dropped out just before the interview due to time constraints. His deputy took part in the in-depth interview instead. The FGDs took place in selected rooms within the hospital compounds while the IDIs were conducted in the participants´ private offices.

Data collection

Discussions and interviews were conducted by two well-trained and experienced data collectors, who were one female and one male masters-level graduates. During the interviews one principal data collector acted as interviewer and moderator, while the other quietly observed the discussion taking notes.

Individualized topic guides were used to conduct interviews and focus group discussions (see Additional file 1 ). They were partially adapted by the data collectors to capture emerging themes as the process of data collection evolved. Interview guides were designed in English. They were translated and back translated to Amharic to ensure coherence. All interviews were conducted in Amharic. After four focus group discussions and eight in-depth interviews with key informants, data saturation was judged to have been reached. All discussions and interviews were audio-recorded, and those recordings were transcribed and translated into English by the two principal data collectors.

Data analysis

We applied thematic framework analysis to analyse the data [ 9 ]. As suggested by Ritchie et al. we followed five analytical steps during analysis: (1) familiarisation, (2) constructing an initial framework, (3) indexing and sorting, (4) data summary and display and (5) abstraction and interpretation. We judged this to be the best suitable approach to analysis as it had been developed to be used in healthcare policy development and has since then become an often referred to approach in healthcare research. The initial framework was designed by the first author based on emerging themes and then applied parallelly by two authors to the same three transcripts. Results were discussed and the framework was adapted accordingly to ensure similar indexing and sorting. The finalized framework was then applied to all transcripts. MAXQDA 2023 was used for software support during analysis.

We used the modified “Concept of Access” to categorize our emerging findings [ 10 , 11 ]. The concept was originally designed by Penchansky et al. in 1981 to describe access to healthcare within five dimensions (availability, accessibility, accommodation, affordability and acceptability) [ 10 ]. As suggested by Saurman we added awareness as a sixths dimension to mirror the total width of our data [ 11 ].

Socio-demographics

Thirty-eight medical professionals and four health bureau representatives took part in our interviews and focus group discussions. FGDs took between 50 and 60 min, while IDIs lasted between 22 and 46 min. Participants in the FGDs were mostly nurses (15) and physicians (7). More than half of the participants had been working at the hospital for less than five years, there were 18 women and 16 men (Table  2 ). Participants in IDIs were predominantly male and all but one below the age of forty years. Among the medical executives were two general practitioners, one surgeon and one gynaecologist. Health bureau representatives were two non-communicable diseases focal persons, one medical service coordinator and one disease prevention team leader (Table  3 ).

Perceptions on cancer patient referrals

Across all interviews and focus group discussions, participants described the need to strengthen referral linkages between primary and secondary as well as tertiary healthcare institutions. Acknowledging the major challenges referred cancer patients faced at time of this study, perceptions on the patients´ determination to overcome those barriers differed: Some participants reported that most cancer patients refused referral, while others stated patients mostly accepted the advice, eager to follow referral. Participants ideas on how to improve the referral for patients with cancer in the rural Southwest of Ethiopia are presented in the Additional file 2 .

The reason [for refusing referral] is mainly the low economical capacity of these patients and also, once they know it is cancer, they get discouraged because of what they heard about the disease. They claim that they have almost no time left to live, and it is [therefore] no use to go to the referral hospitals or it [following the referral advice] has no advantage over staying here. (FGD participant, female, nurse, age group 30–39 years)

It is a life and death condition for them, therefore they will go. As long as they have money, they will go. (FGD participant, female, health officer, age group 40–49 years).

Availability of oncology service

Limited oncological capacities at all levels of the healthcare system.

Participants consistently identified the limited oncological capacities at all levels of the healthcare system as a major barrier to successful referral. At most sites, patients had to be referred upon suspected diagnosis or after surgery and morphological cancer verification. However, referring hospitals struggled to fulfil the receiving hospitals´ referral criteria, such as prior advanced diagnostics, that often were not available at their institution. Organizing the diagnostic workup via private diagnostic services was reported to increase costs for the patients as well as time to referral.

Regarding capacities at tertiary specialized hospitals, participants reported of patients who waited in the capital city for weeks for a preliminary appointment and were then sent back home to await their treatment initiation, which could take months.

Sometimes they come back because the appointment for radiation is in six months, seven months or more…And they are discouraged by going up and down and I put them on my palliative care list. I just give them anti-pain. You know until then [until the reception of an appointment for treatment] they are already dead. (Hospital executive, age group ≥ 50 years)

Lack of oncology specialists and training

Participants also mentioned the lack of oncology specialists at primary and secondary healthcare level. Next to the call for increased speciality and subspecialty training in oncology, health bureau representatives repeatedly mentioned the inability of rural facilities to bind trained specialists. Medical staff and health bureau representatives alike experienced that once trained adequately, oncology specialists would move to the larger cities and specialized cancer centres. Participants suggested to address the lack of oncological expertise in rural areas by establishing formal teachings from specialists to healthcare professionals from lower-level hospitals.

Accessibility

Road infrastructure and transport.

Due to the limited number of cancer centres throughout the country, referred patients often had to travel far to receive adequate treatment. Ethiopia´s road infrastructure was perceived to challenge patients substantially, hindering them to receive services and travel back home in one day.

Most cancer cases were non-emergency referrals and therefore patients had to organize their own transport. Besides the associated costs, patients weakened by the disease and associated treatment often were too sick to endure travelling with public transport.

Accommodation

Protocols and communication within referring hospitals.

In all settings, medical seniors were the ones deciding to refer patients. They would also be the ones writing the referral letter or communicating with the liaisons´ office in case of emergencies. Even though health bureau representatives highlighted the sites´ obligation to have appropriate protocols in place, formal referral protocols were only implemented at one site.

In two FGDs, the topic of unclear communication among professionals within the hospital emerged. This could lead to different parties making differing referral arrangements and resulted in patients being referred inadequately.

Liaisons and the hub-system for emergency referrals

At all sites, emergency referrals were organized via the formal liaison system. Nurses designated as liaisons were in charge of calling the receiving hospital in advance to check for availability of beds and announce the patients´ arrival. Even though participants agreed that the implementation of liaisons had brought major improvements to the system of emergency referrals, shortcomings of the system were discussed across all interviews and focus group discussions:

Liaisons, both at the referring as well as at the receiving institution, were perceived as not well trained to fulfil their responsibilities. They often did not grasp the urgency of the referral, or in case of cancer patient referrals, would refer patients to sites that did not offer cancer treatment.

Another perceived barrier to efficient referral of cancer patients was the newly implemented “hub system”. All primary and secondary hospitals had predefined “hub hospitals”, which were tertiary specialized hospitals acting as the first site to address when referring emergencies to a higher level. However, many of those hub hospitals did not offer oncology services, resulting in referring hospitals omitting the hub system to find adequate care for their patients with cancer. However, patients would often be rejected from hospitals other than the official hub hospital. One positive aspect of the system was the establishment of command posts: Those were interposed, site-independent units facilitating emergency referrals from lower-level hospitals to specialized facilities. Their implementation was perceived to have smoothened communication between referring and receiving hospitals.

Most of the cancer referrals at the study sites were non-emergencies. The extent to which the liaisons´ office was involved into their organization differed between hospitals. Two sites did not involve liaisons into non-emergency referrals at all. Referral letters were written by a senior doctor and patients had to organize their travels by themselves. At other sites referral letters written by doctors had to be signed and registered by the liaisons office who then supported patients in organizing their travels. In some cases, prior phone-calls were made by the health professionals to receiving institutions checking for capacities. However, this was not the norm. Participants consented that non-emergency referral via a well-equipped liaisons office, with the referring site checking for capacity and communicating the referral to the receiving site, would have a substantial impact on cancer patient referral.

Data management

Data management was perceived to play another important role in cancer patient referral. At time of data collection, patients carrying a referral letter were often the only form of communication between hospitals. However, professionals generally judged hand-written referral letters to be an unreliable source of data transmission. Participants from one hospital reported, that the strengthening of the liaison system had improved referral writing practices at their institution, because liaisons would no longer accept imprecise entries on the referral letter. Furthermore, there was a collective call for digital data management between hospitals, allowing for the transfer of patient data.

Participants also hoped that a digital form of data management would improve the feedback system regarding referred patients. Even though health bureau representatives described an official feedback system to be in place, currently hospitals only heard back from referred patients, when they had relatives working in the hospitals or if patients came back for further treatment. Health bureaus stated to be aware of the problem regarding the management of data and highlighted the governments ambitions to improve data quality in health facilities.

If you would only know how people for example get a chance for radiation. Like a feed-back of how meaningful this referral was, whether it makes sense to refer people or whether they are just spending their money and time for nothing…so just simple feed-back on what is possible and what is not possible, would be nice. (Hospital executive, age group ≥ 50 years)

Communication between hospitals

Poor communication between primary- and secondary-level hospitals on one side and tertiary hospitals on the other side was consistently lamented. The formal line of communication via liaisons offices was described to be unreliable due to lack of equipment and congestion.

Informal communication on the other side mostly relied on personal connections between health professionals: At referring sites where professionals knew staff from receiving sites personally, communication worked better than at sites without personal connection.

Besides communication, participants repeatedly regretted the lack of a formal way of receiving updates on services offered at receiving institution. For instance, one medical director did not know about a second hospital having recently started chemotherapy in the capital city. Health bureau representatives confirmed this observation, adding that even in health bureaus they often were not up-to-date regarding services being offered in their catchment area. As a result, patients were referred to hospitals with inadequate treatment capacities.

In the absence of well-functioning formal referral linkages, at some sites a non-governmental cancer organisation acted as the major link between the hospitals. They ensured patients met all the requirements for acceptance at the receiving institution and communicated with receiving hospitals about the referred patients. Multiple participants suggested panel discussions with members from all healthcare levels to establish personal connections and improve communication between hospitals.

And nationally, it would be better if there was a forum prepared for hospitals to exchange their experience and discuss ways to ease treatment for referral patients. For example, a forum between our hospital and TASH [Tikur Anbessa Specialized Hospital]. I believe the health system has many stakeholders such as government organizations, government bodies and so on, so there needs to be a regular forum which includes all the stakeholders. (FGD participant, female, midwife, age group < 30)

Patient navigation

Across all interviews and discussions participants highlighted, that patients with cancer were often severely ill and therefore needed much support with the facilitation of their referral. Existing projects proving the success of “patient navigators” assisting patients throughout their pathways were discussed: At one hospital site a “cancer nurse” was responsible for accompanying patients with cervical cancer to the receiving institutions. Other participants reported of an NGO providing similar services for patients with cancer. Besides establishing skilled hospital personnel or volunteers from NGOs as patient navigators, one participant suggested the introduction of so called “case managers” (former cancer patients) accompanying patients throughout their journey. In the past, this approach had proven to be successful in the context of the referral of patients with HIV.

If the patient links with Mathiwos Wondu Ethiopian Cancer Society then things going smoothly because they receive the patient [in Addis Ababa] and facilitate processes, including cost coverage. But this association cannot reach to all cancer patients, so it is better to expand such kind of program. (Health bureau representative, age group 30–39)

Reception at receiving institutions

Finding the correct services at the receiving institution could be a challenge to referred patients. Many patients were not able to read and could therefore not follow signs at the receiving institution. Furthermore, some patients did not speak Amharic, the language spoken in the capital city.

At the time of the study, patients that were not referred by ambulance had to go through the receiving hospital´s OPD before getting connected to the oncology unit. A fast-track system, channelling referred patients with cancer directly to the oncology unit was thought to decrease waiting times at the receiving institution.

Finding the unit at the hospital compound is also other challenge. I heard there was a patient who came back from the hospital, where he had been referred to, without getting the investigation and management, because he did not find the exact room. So, it’s better to modernize the reception and assign individuals to show the way to the units to which they [the patients] were referred to. (Hospital executive, age group < 30 years)

Affordability

Patients handling of costs.

Participants discussed how the patients’ economic status directly affected their ability to follow the referral advice. It determined not only where they would be referred to (more costly private institutions offered treatment with substantially shorter waiting times), but also whether they could follow the referral at all. Healthcare workers emphasized the efforts patients made to comply with the referral. Because of the disease, patients often were unable to work and cover the costs themselves. Mostly, costs were arranged with the family or within the communities. Some patients rented their land or sold their property. However, facing the uncertainty of surviving the disease even if they followed the referral, many patients refused referral. Those patients then turned to cultural healers or went back home, possibly preparing for death.

Governmental support

In the absence of universal health insurance, the Ethiopian government provides free cancer treatment at public hospitals for patients with a low economic background. However, participants reported regular shortages of medications at tertiary public hospitals. In those occasions, even patients eligible for free treatment were told to buy medication at private pharmacies – leading to them having to pay for treatment which was supposed to be free. In addition, the governments´ support did not cover expenses for food and accommodation before and during the treatment. Patients relied on having relatives in the city. Participants agreed that those factors often resulted in patients not being able to afford following the referral advice, even though they were eligible for free treatment.

Non-governmental support

Compensating for the lack of governmental aid, all study sites had support mechanisms in place trying to enable patients financially to follow the referral advice. Those mechanisms included social workers assisting the patients in raising the necessary money as well as the provision of free transport. However, the hospital´s ability to support was perceived to be insufficient, often resulting in staff personally donating money for patient referrals. Again, NGOs were also perceived to play an important role in decreasing direct and indirect costs for patients. They paid for travel expenses and offered food and accommodation in staying houses close to the receiving hospitals.

Health education

There was large consent on the importance of educating patients about their cancer disease. Participants highlighted, that patients would only follow the referral advice, if they were informed properly about their disease and its possible outcomes. The provision of health education was described to take place on different levels: On community-level (health extension workers, public gatherings, and mass media), hospital-level (lectures on health-related topics in the waiting areas each morning) as well as on a one-on-one level during appointments. There was a general perception, that educated and well-informed patients were more likely to follow the referral advice. Uneducated and uninformed patients would often turn to traditional medicine instead.

Most of the time people tend to do what they believe. So, if they understand well, they don’t hesitate to follow a referral process unless they may have financial problem. (Hospital executive, age group < 30 years)

Availability of public information on services

In addition to information about the cancer disease, participants agreed on the importance of providing patients with information on costs and waiting times. They regretted not being able to give patients the numbers on how much money they needed at the receiving institution. This led to referred patients having to return home without any treatment, because they ran out of money while waiting.

Acceptability

Trust in the health system.

The patients´ perception of referral as a “death sentence” was one more emerging theme. Even though, knowledge about cancer in rural communities was perceived to have increased over the last years, cancer was still reported to have a fatal reputation. Rumors of rejection and long waiting times at the specialized hospitals added to the patients´ believe that once referred, they would never come back alive.

Healthcare professionals suggested to learn from the countries´ experiences with HIV which also used to be perceived as “death sentence”. Participants suggested to extend existing cancer awareness campaigns and include education about cancer into the curriculum of health extension workers. Establishing cancer as a treatable disease in communities and families was felt to be essential to convince patients of the significance of following the referral.

So likewise, when we come to cancer, it follows a similar pattern as when HIV first came to Ethiopia. HIV patients used to feel hopeless and likewise cancer patients are feeling like that now. Secondly, the status of HIV reached what it has today due to integrated relent less effort, so if we do the same with cancer, I bet we could save lots of lives. (FGD participant, female, nurse, age group 40–49 years)

Stigmatization

One more barrier to successful referral was reported to be the stigmatization patients from rural areas experienced at tertiary hospitals. Patients often returned to referring hospitals complaining of having been handled badly at the receiving institution. Establishing a welcoming environment at receiving hospitals was regarded to contribute to the patients´ successful treatment initiation at the tertiary healthcare level.

They [referred cancer patients] come [back] and complain “We would rather die here than go there [again], they don’t accept us as you do, they don’t talk to us as you do, they harass us saying ‘people who come from rural areas’, the place they give [us] is not good.’ They also complain like ‘they host those who come from near that area, and they only give distant appointments to us.’ (FGD participant, female, nurse in a leadership position, age group < 30) .

Patients with cancer referred from primary and secondary hospitals to tertiary specialized care face challenges in all dimensions of Penchansky´s revised concept of access. We found a broad range of experiences among medical and local health bureau representatives on how to address those challenges aiming to provide access to cancer care in rural Ethiopia.

Participants felt strongly about the need to increase oncological capacities throughout the country as a foundation for successful referral. Expanding specialized training and connecting specialists in oncological societies are tools to strengthen a nation´s expertise in oncology care [ 12 ]. Ethiopia´s first clinical oncology residency program was initiated at Tikur Anbessa Hospital in 2013. Since 2019, the “Ethiopian Society of Haemato-Oncology” serves as a national platform for knowledge exchange. One intervention suggested by participants of the study was the training of non-oncology-specialists to provide oncological diagnostics and treatment. Experiences with this task shifting model from other countries in Sub-Saharan Africa are promising: An example could be the training of non-oncologists (internists, paediatricians, general practitioners, and nurses) in delivering cancer care, as it has been successfully done in Rwanda over the past year [ 13 ].

We identified three possible ways patients with cancer were referred: non-emergency referral via referral letter only, non-emergency referral via the liaisons´ office and emergency referrals. Most cancer patients were non-emergencies and mostly referred via referral letters only. Standardized referral letters had been introduced by the Ministry of Health in 2010 and were used in all four hospitals [ 14 ].

While oncological emergency referrals were organized via the official hub-system, for non-emergency referrals there were no inter-hospital referral protocols. An intra-institutional protocol for cancer patient referral was in place at only one of our study sites. Knowledge on where to refer patients with cancer relied on the health professionals´ personal experiences and expertise. Even though the hub-system for emergency referrals was perceived to be a barrier to the referral of patients with cancer, participants consented, that having a set system defining where to refer patients had improved emergency referrals in general. Expanding the system to include non-emergency referrals, sensitive to the availability of advanced oncological care, could improve referral of patient with cancer substantially.

In its “Guideline for implementation of a patient referral system” the Ethiopian Ministry of Health foresaw a “referral coordinator” at each hospital - responsible for the facilitation of emergency as well as non-emergency referrals [ 14 ]. In our study, only one hospital reported organizing non-emergency referrals via the liaisons´ office (which served as referral coordinator). Training and equipping designated personnel at the liaisons´ office, enabling them to organize both emergency and non-emergency referrals in a reliable manner emerged to be of substantial significance when improving cancer patient referral.

An important aspect in strengthening the referral linkage between healthcare levels is the standardization of data management. At the time of our study, patient data was collected in paper files and referral-letters were hand-written. Currently the Ministry of Health is developing a standardized electronic health record system to “strengthen digitization of routine and non-routine data collection, management, analysis and use” [ 15 ].

To enable patients to follow referral advice, participants also suggested the implementation of patient navigators. In high-income countries patient navigation programs are a well-established tool to promote access to cancer care [ 16 ]. Nurses or lay persons, who have been trained to be “patient navigators”, accompany patients with cancer throughout their diagnostic and treatment journey. Depending on the extent of the program, patient navigators provide patients with health education, facilitate appointments, and arrange linkages to follow-up services. In countries without universal health coverage, the navigation services often also include stipends for transport, accommodation, and treatment [ 17 , 18 ]. In the past years, the concept of patient navigation has been increasingly adapted in low- and middle-income countries, showing positive effects on outcomes like treatment initiation and adherence [ 19 ]. Initiatives such as the BEACON Initiative (Building expertise, advocacy, and capacity for oncology navigation) launched by the American Cancer Society implementing patient navigation programs at national referral hospitals in Uganda and Kenya serve as examples [ 20 ].

Furthermore, a smooth reception of referred patients at the receiving institutions was identified to be key for a successful referral. Participants suggested to address the patients´ difficulties in finding the correct units at the receiving hospitals by establishing an easy-to-follow signposting, as well as staffed info-points. Such low-cost concepts, sensitive to the patients´ different language and educational backgrounds, have previously shown to improve the patients´ experiences at receiving institutions substantially [ 21 ].

A current project addressing the need for “fast-track” pathways for patients with cancer at receiving institutions is the “Walk-in-Clinic” at the Else-Kroener-Center for Cancer Care in Addis Ababa. In collaboration with the surgical and oncology units at Tikur Anbessa Hospital the centre enables women with suspected cancer to omit the usual out-patient department pathways and be directly seen by gynaeco-oncologists and breast surgeons [ 22 ].

Direct and indirect costs were perceived to be a major barrier to successful referral. Patients with sufficient financial means could visit private hospitals or receive care in countries with better access to high-quality healthcare. However, with an income per capita of 940$ and approximately one quarter of the population living below the international poverty line, most patients in Ethiopia rely on the public healthcare sector [ 23 , 24 ]. Ethiopia aims to establish a universal health coverage by 2030 [ 1 ]. To reach this ambitious goal, the government has established multiple channels to increase access to healthcare for its population: Social health insurance is currently being implemented for people working in the formal sector, while community-based health insurance schemes are successfully expanded within the large informal sector [ 1 ]. In addition, certain oncology-associated interventions were recently added to the “Essential Health Services Package”, guaranteeing their provision free of charge, or with cost-sharing and cost-recovery mechanisms in place at public hospitals [ 25 ]. Patients who cannot afford care are eligible for free treatment, provided they receive a “fee waiver” from their local health bureau [ 1 , 26 ].

Nevertheless, the multitude of unofficial financial support mechanisms in place at all study sites demonstrates that patients with cancer in rural Ethiopia still face substantial financial challenges. Unavailability of necessary medications in public institutions (resulting in patients having to buy treatment at private pharmacies) as well as the costs for transport and accommodation associated with the treatment, emerged to be major barriers to oncology care. These findings are confirmed by previous studies [ 26 , 27 , 28 , 29 ]. Reliable mechanisms for the procurement and financing of cancer drugs at public hospitals are needed to decrease direct costs of treatment. Indirect costs could be tackled by the provision of governmental travel stipends for those in need as well as the establishment of staying houses close to the cancer centres.

We found high awareness regarding the significance of health education in the provision of cancer care among health professionals and health bureau representatives. This mirrors the governments´ focus on health education since the launch of Ethiopia´s Health Extension Program in 2003. Core of the program are health extension workers who promote primary healthcare on the community level. A study by Funga et al. found health extension workers to be the main source of information on cancer for most of the rural population [ 30 ]. However, even though the Health Extension Program has proven to be highly successful in providing health education to Ethiopia´s rural population, awareness on cancer is still insufficient and the perception of cancer as a “death sentence” common [ 30 , 31 , 32 , 33 ]. Expansion of existing and initiation of new cancer awareness programs is therefore essential to increase knowledge about cancer in rural communities. In addition, the implementation of survivor groups could contribute to change the patients´ attitude towards cancer and improve trust into the healthcare system [ 34 ]. Establishing cancer as a curable disease is important to convince patients to follow the referral advice.

Interestingly, while much reported previously in the context of access to cancer care, stigmatization of patients in their community did not emerge to be a major barrier to successful referral in our study [ 35 ]. This might be explained by the healthcare professionals´ and health bureau representatives´ perspective of the study. A recent study on the perceptions of cervical cancer care among Ethiopian women and their providers supports this explanation: While patients discussed the role of stigmatization within their communities vividly, providers did not mention stigma as a major barrier to care [ 35 ]. On the other hand, participants did report about patients feeling stigmatized at receiving institutions due to their rural background. While we could not find any literature on stigmatization of rural patients in specialized hospitals in Ethiopia, poor handling and disrespectful communication at tertiary hospitals has been described before [ 35 , 36 ]. Further research on patients´ experiences at tertiary hospitals as well as health professionals´ training is needed to guarantee culturally sensitive access to cancer care.

We believe it a great strength of this study to have captured a broad variety of perspectives of healthcare professionals and health bureau representatives who are involved into cancer care at the primary and secondary level of the healthcare system. However, our study has certain limitations: First and foremost, our results are limited by the participants´ provider perspective. To receive a comprehensive understanding of the cancer patient referral in rural Ethiopia, perspectives of referred patients have to be considered. In terms of sample size, the number of IDIs and FGDs conducted for this study falls within the lower end of what is typically considered adequate in qualitative research. However, while we cannot exclude the possibility that an increased sample size would have contributed new data, after four FGDs and eight IDIs we felt we had reached data saturation. Working with a small sample size increases the importance of thorough purposive sampling. Following the guidance of Ritchie et al., we ensured best possible representation and diversity within the sample with regards to variables such as age, years of experience, field of expertise, healthcare level, and hospital size [ 9 ]. This approach also helped to minimize, however not eliminate, a potential sampling bias.

Furthermore, we did not use a formal protocol regarding the triangulation of data collected by different methods and from different participant groups. However, in the final phases of analysis we did colour-code different origins of elements within themes and subthemes to be aware of consent and contradictions between the different participant groups.

In the rural Southwest of Ethiopia, decision makers are aware of multi-factorial challenges cancer patients face when being referred from lower-level hospitals to tertiary-level oncology care. A way forward requires a multi-faceted approach involving capacity building, improved coordination between different levels of the healthcare system, standardized protocols and data management, financial and social support mechanisms, as well as awareness programs. Lay persons as patient navigators could be involved. Establishing an environment for inter-institutional exchange and integrating stakeholders´ broad experiences from the primary and secondary healthcare level into future policy making is a key to reduce disparities in cancer care and make oncology care available to Ethiopia´s large rural population.

Data availability

The datasets used and analysed during the presented study are available from the corresponding author on reasonable request.

Abbreviations

Consolidated criteria for reporting qualitative research

focus group discussion

in-depth interview

non-governmental organization

outpatient department

fine needle aspiration cytology

non-communicable diseases

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Funding was provided by Else-Kroener-Fresenius-Foundation (HA18_31SP), Bundesministerium für Bildung und Forschung Germany (01KA2220B), and the Wellcome Trust (Del-22-008). The Funders had no role in the design and conduct of the study, collection, management, analysis, and interpretation of the data; preparation, review, or approval of the manuscript; and decision to submit the manuscript for publication.

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JT: conception and design of study, collection and assembly of data, analysis and interpretation of data, drafting of the work; MM: analysis and interpretation of data, drafting of the work; SN: conception and design of study, revision of the manuscript; WB: collection and assembly of data, analysis and interpretation of data; YA: collection and assembly of data, analysis and interpretation of data; ES: analysis and interpretation of data, revision of the manuscript; KA: analysis and interpretation of data, revision of the manuscript; MG: conception and design of study, revision of the manuscript; SG: conception and design of study, revision of the manuscript; AA: conception and design of study, revision of the manuscript; EJK: conception and design of study, revision of the manuscript; AW: conception and design of study, collection and assembly of data, revision of the manuscript. All authors read and approved the final manuscript.

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Trabitzsch, J., Marquardt, M., Negash, S. et al. Understanding referral of patients with cancer in rural Ethiopia: a qualitative study. BMC Cancer 24 , 553 (2024). https://doi.org/10.1186/s12885-024-12294-7

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DOI : https://doi.org/10.1186/s12885-024-12294-7

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